Archive | News RSS feed for this section

AOL Health interviews Jeanette O’Donnell

12 Mar

America Online (AOL) has a series of articles on autism recently added to their site. They have 5 articles, including one on Jeanette O’Donnell. Ms. O’Donnell is very active online with her blog What are they thinking? and commenting as mom26children.

Ms. O’Donnel describes herself as:

I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.

The article, Caring for — and Blogging About — Her Five Autistic Children

I’ve always liked reading her posts and her comments. She’s a straight shooter, she doesn’t hold back, and she stays friendly.

Here is a section from the AOL piece (but take the time to go and read it)

O’Donnell:… But you still haven’t asked the question.

AOL: What is the question?

O’Donnell: People ask why I had six when I knew the first was autistic. First, the doctor told us there was no chance that a second kid would have it, so we didn’t know. But I want the people who question them to meet them. And I want them to tell me which one shouldn’t be here. Every one of my kids belongs. They are here for a reason. I don’t know what it is, but there’s a reason. Well, actually, I do know the reason.

O’Donnell: What’s the reason?

O’Donnel: So I could be their mama, that’s why they’re here! It’s very selfish. No, the truth is: They’re gonna teach the world a lot.

AOL Health interviews Dora Raymaker

12 Mar

AOL Health as a series of articles on autism. One, well worth your time to read, is by Dora Raymaker. The piece is Living with Autism, as Ms. Raymaker is an adult autistic.

I first became aware of Ms. Raymaker when she was blogging on Change.org. She is a member of the Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) and the Autistic Self Advocacy Network (ASAN).

The interview is well worth the time, take the time to go and check it out. Here is a snippet:

AOL Health: So, how does autism affect your life?

DR: This question has never made much sense to me. There is no part of my daily life that is not affected by my developmental disability. At the same time, I am a complete person, and more things than just my developmental disability color my experiences. I can’t separate out the integrated parts of me. How does not having a developmental disability affect the life of someone who does not have one? How can that question be answered?

New LBRB Feature

10 Mar

Never one to rest easy when a new technology becaome popular, I wanted to find a way to harness Twitter to make it appealing to LBRB readers. I think I have now. If you go to https://leftbrainrightbrain.co.uk/tweets/ you’ll see a live updating list of the latest tweets from and about a selection of Tweeters including myself, Liz Ditz, Orac and others. Just leave the page open it’ll update itself as these individuals tweet. If it become popular enough I’ll port it into its own site.

If you tweet about autism and/or science that discusses autism then please contact me and I’ll add you to the list of contributors.

An open letter to Jenny McCarthy

9 Mar

Dear Jenny McCarthy,

You start a recent HuffPo post by stating:

Parents of recovered children, and I’ve met hundreds, all share the same experience of doubters and deniers telling us our child must have never even had autism or that the recovery was simply nature’s course. We all know better, and frankly we’re too busy helping other parents to really care.

I simply don’t believe you. Let me explain why.

Firstly and least importantly is your track record as a celebrity parent. You used to claim that you were an indigo mum and your son a crystal child. Indeed you used to participate heavily in the online Indigo community but most of those web pages have disappeared from the web over the last few years. Who’s afraid of the truth there Ms McCarthy? Were you worried those beliefs were just _too_ kooky?

Secondly and much more importantly is your track record as a health advocate. You and your boyfriend have lied about the makeup of vaccines, claiming that they contain antifreeze for example, in order to scaremonger.

Regarding these hundreds of recovered children I have one simple question…where are they? According to Generation Rescue there should be hundreds of recovered children (someone from GR once claimed thousands) and yet I have never seen one – and that includes your own child Ms McCarthy. Your own child that has a very strong doubt over his own autism diagnosis.

It’s easy Ms McCarthy, all you have to do is get onoe of these hundreds of children and do a proper science led case study on them. Have it published in a decent journal and then the scientific community will listen to you. The leadership of GR have known this for _years_ – why has it never been done?

How do you establish that these hundreds of autistic children have not recovered via non biomed means? Helt et al report that autistic children have a recovery rate of between 3 and 25%. And guess what, when I asked her, Helt told me:

The recovered children studied by us and others, and described above, however, have generally not received any biomedical intervention.

…

Complete medical histories were taken, including vaccination status, and had it turned out that our optimal outcome sample hadn’t been vaccinated or had by and large received chelation, we certainly would have reported that

You go on to say:

Corner one of the hundreds of doctors who specialize in autism recovery, and they’ll tell you stories of dozens of kids in their practice who no longer have autism. Ask them to speak to the press and they’ll run for the door.

I bet they will. They have no answers to the serious scientific issues surrounding autism and instead peddle items like foot detox or urine injection therapy.

You then say:

Who’s afraid of autism recovery? Perhaps it’s the diagnosticians and pediatricians who have made a career out of telling parents autism is a hopeless condition.

I donlt think anyone is _afraid_ of autism recovery Ms McCarthy but I’ll tell you what some of us _are_ afraid of and thats someone with a big mouth and not a lot of science behind her relating horror stories about vaccines and singing the praises of doctors who have no idea what they’re doing.

You then ask about the MMR, which I believe you blamed for your sons autism:

Even with the MMR, studies only compare kids who have otherwise been fully vaccinated. Is that really an honest way to evaluate the issue?

You are wrong Ms McCarthy, clinical studies have looked at the MMR belief and found it wanting. During the Autism Omnibus, Stephen Bustin spent over 1500 hours looking at the only work that alleged an MMR connection autism and found it seriously wanting. Get someone who knows about science to explain it to you.

You say:

How do you say vaccines don’t injure kids, when a government website shows more than 1,000 claims of death and over $1.9 billion paid out in damages for vaccine injury, mostly to children?

I say: _who_ says that? I don’t know anyone who claims vaccines are 100% safe. You’re creating a strawman of enormous proportions to deflect from the reality of your crackpot ideas about autism. Like _all_ medical proceedures, vaccination carries some risk. Nobody claims they don’t.

You then say:

In the recent case of Dr. Andrew Wakefield, why did the press constantly report that his 1998 study said the MMR caused autism when anyone could read the study and know that it didn’t?

Quite possibly because during a press conference given _about_ the paper in question Andrew Wakefield needlessly made claims that linked MMR to autism causation.

…the work certainly raises a question mark over MMR vaccine, but it is, there is no proven link as such and we are seeking to establish whether there is a genuine causal association between the MMR and this syndrome or not. It is our suspicion that there may well be…

is just one amongst many.

Ms McCarthy I find it deeply amusing that directly underneath your closing line:

Who’s afraid of the truth? Usually the people it would hurt the most.

is a lovely graphical link to all of your turgid books. It seems to this autism parent that you have as much to lose in terms of finance as well as credibility as those you name.

The absolute truth is that you don’t understand the science Ms McCarthy. You have well and truly missed the boat on the MMR vaccine, you have no science that establishes any aspect of autism to any aspect of vaccination. All you have is a big mouth and lots of money to spend getting it out there in front of people. I absolutely assure you, you do not speak for the autism community. You speak for the anti-vaccine community and them alone.

UK Advertising Standards Authority Rules on Options Institute

3 Mar

The Kaufmans ran an Ad in the regional press over here which read:

AUTISM RECOVERY 2 Hours to change your child’s life With American Autism expert Raun K. Kaufman, himself fully recovered from Autism. Free Public Lectures

ASA recieved 2 complaints on the adverts (no, neither were me) and investigated based on the following:

1. Two readers believed the ad was misleading because it implied that autism was a temporary condition, which was curable.

2. One of the readers also believed the ad was misleading because it implied The Autism Treatment Center of America’s programme would be effective within two hours.

3. The ASA challenged whether the testimonials were genuine.

Points 2 and 3 were not upheld which meant ASA were satisfied that point 2 referred to the length of time the lectures went on for and that the testimonials in point 3 were genuine.

However, point 1 was upheld:

The ASA noted the ad referred to “AUTISM RECOVERY” and considered that the word recovery was likely to be understood by readers to mean that OIF were offering a treatment or “cure” for autism. We also noted OIF’s acknowledgment that results of the programme varied.

We noted we had not seen full copies of the three earlier studies on The Son-Rise Program to which OIF had referred. However, we understood from the summaries provided that none of those studies assessed whether the programme could cure Autism. We noted the discussion paper described how the principles of The Son-Rise Program were compatible with a more general understanding of autism and autistic behaviour, established through research carried out over the last 50 years. We also noted, however, that that paper did not assess the efficacy of The Son-Rise Program itself, but suggested that further independent research into the programme was needed. We therefore considered that the studies and discussion paper were not sufficient to support the efficacy claim made for The Son-Rise Program.

We noted two studies were currently being conducted on The Son-Rise Program, but considered that, whatever the initial observations might be, because the results of the studies were as yet unknown, unpublished research did not substantiate the claim. Because we had not seen robust scientific evidence to support the claim of recovery from autism, we concluded that the ad was misleading.

On this point, the ad breached CAP Code clauses 3.1 (Substantiation), 7.1 (Truthfulness) and 50.1 (Health and beauty products and therapies – general).

Successful blogging by Steven Novella: the Desiree Jennings story

26 Feb

I stayed away from this story until now. It isn’t about autism at all, except that “Jenny McCarthy and Jim Carrey’s Autism Organization–Generation Rescue” decided to take the story on. Why a supposedly autism organization took on the story of an adult who was supposedly injured by a flu vaccine is not clear to this reader. But, this story shows the power of quality blogging to affect the discussion of a national topic.

Short version of the story: Desiree Jennings was given a seasonal flu vaccine. Sometime after that she developed problems in movement and speech. She attributed these problems to the vaccine, citing dystonia as the condition. This was questioned by some bloggers, including a neurologist, Dr. Steven Novella. As a neurologist, Dr. Novella is experienced in conditions such as dystonia. Ms. Jennings was treated by a well known name in the autism-alternative-medicine community, Dr. Rashid Buttar. The story was given national attention, including a segment on the U.S. TV show Inside Edition.

The whole story of the alleged vaccine injury is long and strange. The current status, it gets even stranger. Ms. Jennings appears to have made a full recovery, walking and driving a car. She talks better, with the addition of a rather strange accent. This was found when Inside Edition decided to do a followup on Ms. Jennings, apparently after reading Dr. Novella’s take on the story. From Dr. Novella’s recent blog post:

Another angle to this case was the mainstream media coverage. The story was made national primarily by an Inside Edition segment in which they took her claims of being horribly injured by the flu vaccine at face value. They did throw in a caveat that doctors say the story should not dissuade the public from the vaccine (the “not” was incredibly and deceptively edited out in the YouTube version of the story). But generally it was among the worst science reporting of 2009.

So I was a bit surprised when I was contacted by a producer from Inside Edition about a possible follow up segment on the story. He had read my blog posts on Ms. Jennings and realized they got the story entirely wrong. To his credit he wanted to do follow up (unfortunately rare in mainstream journalism) and tell the real story. This resulted in the segment that aired last night

One reason to bring this story up now is highlighted by Dr. Novella: the effect of science bloggers on a major news story:

And finally (if you will forgive the self-serving observation) the story highlights the new power of the science-blogging community. The Inside Edition follow up segment was entirely due to the science bloggers who covered the story – and told the real story behind the media sensationalism. We are influencing the media cycle in a good way. At the very least we are making ourselves a valuable resource to the mainstream media, and hopefully raising the quality of science journalism in general.

Dr. Novella did well in blogging this story, and Inside Edition did well to reconsider the story in light of the well-reasoned discussion of Dr. Novella.

Video of the recent Inside Edition segment is here:

ABC Radio interviews Brian Deer

25 Feb

RearVision, an ABC (Australia) radio news program, has an interview with Brian Deer titled The MMR vaccine scare. They have both audio and transcript available.

Even before Keri Phillips of ABC gets to Mr. Deer, she makes it clear that this isn’t going to be some fluff piece with faux-balance:

What Richard Horton didn’t know at the time, and neither did some of Wakefield’s 13 co-authors, was that some of the claims in the paper were false. It wasn’t bad science but rather outright fraud that ultimately led to the finding of misconduct against Andrew Wakefield. We’ll come to that in a moment, but first, what really set this story running was a press conference that Wakefield held at the Royal Free Hospital where he worked as a gastroenterologist.

My guess is that most readers here know the Wakefield story, so I won’t quote discussion of that. I will note the suggestion of moving away from anonymous peer review made by Trisha Greenhalgh. I, for one, am not in favor of that. I feel that referees will be less critical if they know that the authors will know the referees names.

Here is a closing statement by Brian Deer:

The thing that really concerns me is that there’ve been three kinds of victim in all of this. Firstly there’ve been children who’ve developed measles, and we’ve had children in the UK who’ve died of measles as a result of this. They’re the first victims. The second victims are parents who really agonised and gone through hell over whether they should vaccinate their child. But there’s a third kind of victim, which I think people often forget, and these are parents who blame themselves for their child having autism because they took that child to be vaccinated. And you can imagine the nightmare that these parents go through, and I’ve spoken with some of them, and I’ve had mothers just collapse sobbing saying, ‘Not a day goes past when I don’t blame myself for taking my child to be vaccinated. It’s my fault that he’s got autism, it’s my fault that his life will never be the same as that of other children.’ And I really feel for those parents, and I think we should remember these victims of this scare because these mothers have suffered.

Then there are those of us who have seen 12 years of “autism” advocacy groups who can’t concentrate on anything but vaccines and 12 years of useless research trying to support what Keri Phillips calls not “…bad science but outright fraud.”

Mother Jones and Boston Globe on the DOJ investigation of the Judge Rotenberg Center

25 Feb

The recently opened Department of Justice investigation on the Judge Rotenberg Center is being noticed by the media.

Mother Jones has a piece, ‘School of Shock’ Under Federal Investigation, which references their 2007 article, School of Shock.

From the recent piece in Mother Jones:

“The initial response of the Department of Justice was that they didn’t believe that they could take action because they didn’t believe they had jurisdiction over privately operated facilities,” wrote Nancy Weiss of the National Leadership Consortium on Developmental Disabilities. “I suggested to them that they consider jurisdiction under the ADA on the basis that people with disabilities are being treated in ways that are neither legal nor would be tolerated if applied to people who do not have disabilities.” Weiss reported that the DOJ couldn’t give her an estimate on how long their investigation would take.


US opens Canton school inquiry
Shock discipline at Rotenberg center prompts concern

From that article:

Renee Wohlenhaus, deputy chief of the Disability Rights Section of the Justice Department, said in a letter last week that her agency would look into whether the Rotenberg Center violates the nation’s laws on the fair treatment of the disabled. She did not respond to a request for an interview.

While Wohlenhaus’s letter referred to the inquiry as a routine investigation, federal officials and disability advocates say the investigation is significant because the agency does not choose to probe all complaints they receive.

Nancy Weiss, director of the National Leadership Consortium on Developmental Disabilities and the author of the letter on behalf of the disability groups, said her conversations with Justice Department officials lead her to believe that their probe will be far from “perfunctory.’’

I’ll point out that Kev can be counted amongst the many bloggers who have discussed the JRC in the past. His piece, Judge Rotenberg Center has more comments than I can recall for any piece on this blog.

Addenda: Add UPI with Feds probe school’s shock treatments

and the Boston Herald: Feds probe special needs school

And the Washington Post: Feds probe Mass. special needs school

And FoxNews Boston: Feds Probe Massachusetts Special Needs School That Used Shock Therapy

Education News fumbles on the Judge Rotenberg Center investigation story

25 Feb

I recently blogged about the U.S. Department of Justice opening an investigation on the Judge Rotenberg Center (JRC). Many of the children in the care of the JRC are subject to electric shocks as part of their program.

EducationNews.org picked up the blog piece I wrote and copied it to their own blog, with one major difference. They added an introductory paragraph taken directly from the JRC’s website.

The JUDGE ROTENBERG CENTER (JRC) is a special needs school in Canton, Massachusetts serving ages 3-adult. For 38 years JRC has provided very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems and developmentally delayed students with autistic-like behaviors.

This changes the tone of the story dramatically and gives the reader the impression that I believe that the JRC is “very effective”.

Here is my comment on their blog:

As the person who wrote (most of) the piece above, I am both glad that Education News has decided to pick up this story and, quite frankly, angered at the way it has been handled.

I was not contacted before Education News ran this piece. Had they done so, I would have certainly given permission to run the piece–as it was written. The opening paragraph was added to my piece without permission. That paragraph is how the Judge Rotenberg Center portrays itself, being a direct quote from the home page of the JRC website:

” The JUDGE ROTENBERG CENTER (JRC) is a special needs school in Canton, Massachusetts serving ages 3-adult. For 38 years JRC has provided very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems and developmentally delayed students with autistic-like behaviors”

“JRC has provided very effective education and treatment” frames the piece in a completely different manner than I intended.

Again, I would gladly give permission for the use of this piece, in its original form.

For the record, I am the parent of a child with multiple disabilities. In my state, aversives are illegal. Under no circumstances would we allow the JRC to operate here.

I would encourage readers to read the letter and addendum and ask again can we “condone treating persons with disabilities in a manner that would not be tolerated if applied to other segments of the population”?

Education News has yet to respond either on their blog or via email.

I am glad that the news is getting out about the investigation (more on that soon). I’d be totally fine with Education News copying my post–if they did it accurately. I want this message out there, but don’t tag the “JRC is very effective” message to my name (or pseudonym, as it is).

(note, I corrected EducationNews.com to EducationNews.org, and added a link to their post)

It’s time to get past the idea that autism is genetics

19 Feb

Or, at least, this is what David Kirby has to say in a recent interview.

Yes, I’m tired of David Kirby too. But some statements are just plain silly.

“I don’t believe autism is genetics,” he said. “I wish we could just get past that argument and accept the fact that these kids have been hit with some environmental trigger of some sort, or sorts, combined with these genetic predispositions … and get on with it.”

Here’s an admittedly sarcastic response: I am so glad when outsiders to the autism community spend years promoting an agenda that attempts to take focus away from needed science.

And, yes, I noticed that to David Kirby it is still all about “these kids”. Adults just don’t register on his radar.

Mr. Kirby is not always consistent. In the past he has stated:

I have always said there may be a small percentage of people with autism spectrum disorder (perhaps those with Asperger Syndrome) whose symptoms are a result only of their genetic makeup, with no environmental factors involved at all.

So, “a small percentage” in his view, can now be forgotten as we “get on with it”.

I wish Mr. Kirby well with his new book. I hope for the sake of the people whose lives he will affect, he has learned from the damage he caused to the autism communities.

← Older Entries
Newer Entries →